Interstitial Cystitis

DISCLAIMER
This is a paper of my experience with Interstitial Cystitis only and is not
intended for use in diagnosis, treatment or any other medical application. This
paper does not endorse any of the medications, products or treatments mentioned
or discussed. Any medication or treatment you consider should be discussed with
and approved by your personal physician.

I CURED my Interstitial Cystitis.
I am a 79 year old male in excellent health except for over 6 1/2 years of
suffering from Interstitial Cystitis.
April 1, 1993 I went to my family doctor for a terrible bladder pain and burning
when I would urinate. He put me on antibiotics (Doxycycline) for 14 days for
Prostatitis. I went back on June 29, 1993, Jan. 24, 1994, April 16, 1994, and
each time he put me on Doxycycline for 14 days for prostatitis.
On July 7, 1994 I went to a urologist expecting prostate surgery. He sent me to
the hospital for a Cystoscope, x-rays and other tests. He continued to treat me
for Prostatitis, which I did not have, with Sulfa, which I was allergic to. I
was on antibiotics for 196 days in one year.
I went to two more urologists, who continued to treat me for prostate problems
and I continued to get a lot worse. At this point I decided to be my own doctor.
On October 30, 1995 I went to the Mayo Clinic in Rochester, MN. With another
Cystoscope, x-rays and tests, I was diagnosed with Interstitial Cystitis. The
Doctor told me he had good news and bad news for me. He said I. C. would not go
into cancer but there was no cure for I. C.
I would not accept the fact that there was no cure for I. C. I think that every
organ in my body will heal itself with the proper medication, diet, lifestyle
and time (with few exceptions). I would not take any of the medications to help
me tolerate Interstitial Cystitis or hide the pain. I was only interested in the
cause and the cure for Interstitial Cystitis.
For the next two years after I was diagnosed with Interstitial Cystitis I took a
number of DMSO treatments and other medications, trying to cure my I. C. I
thought I got some relief 8 or 10 days after I had a DMSO treatment that seemed
to help for 2 or 3 weeks, and I would start into a relapse again.
I have kept a voiding diary of the time of day and volume of my trips to the
bathroom since Nov. 1995. During my last relapse, Aug. 12, 1999, I was making
12-14 trips to the bathroom during the day with 1½-2 ounces of volume and 4-5
trips at night with 2-3 ounces of volume. I go to the bathroom NOW 5 times
during the day with 5-8 ounces of volume and 1 trip at night with 7-10 ounces of
volume and with no pain. I should probably drink more water. My prostate may be
part of my problem at night.
I do delay my trips to the bathroom as long as I can with the hopes of
stretching my bladder, but it did not help until I got rid of the pain and
urgency.
It hurts me to talk to and read about so many young people with I. C. I worry
most about women 20-50 years old who are trying to work, raise a family, keep
house, hold a marriage together and have accepted the fact that they are going
to have to live with I. C. for the rest of their lives.
I have not used the word cure for (YOU) because I do not know how you would
define cure.
I consider myself cured, but if you define cure as a program that will cure
every case of Interstitial Cystitis including all the related problems, it will
be impossible to find. I think I may be very near a typical Interstitial
Cystitis patient without the complications.
If a cure is defined as a major contribution that helps a lot of I. C. patients
and narrows the focus of the search for a cure, maybe we are getting closer. If
we can cure the typical I. C. patient, then we can start on the Allergies,
Fibromyalgia, Vulvodynia, Endometriosis, Chronic Fatigue Syndrome, Headaches,
Depression, Lack of Sleep and others. If I. C. causes or aggravates any of these
problems, I would hope that any relief for I. C. would help relieve some of
these other problems.
I have taken, or thrown away, between $2,000 and $3,000 worth of pills and
medicine and had $7,275 worth of DMSO treatments in the doctor's office, plus
two expensive hospital trips for tests.
On Dec. 14, 1997 I was in the middle of a bad relapse. I went to my urologist
for a DMSO treatment. She thought I might have a slight prostate infection and
she gave me a prescription for (an Antibiotic) Doxycycline, 2 a day for 14 days.
I had talked to a nice lady from Farmville, VA and she suggested that I should
be on an Anti-Yeast and Acidophilus program while I was on antibiotics. I asked
my doctor for a prescription for Nystatin 500,000 u tablets. She prescribed
enough for 2 a day for 15 days and I went into remission for 4 to 6 weeks. I
could not put it all together, but it was my first hope for a cure for my
Interstitial Cystitis.
Since my Doctors did not have many answers to my problem, they were very good
about giving me prescriptions I asked for.
In early 1998 I started on a long term Antibiotics, Nystatin and Acidophilus
treatment program, but I had so much reaction to some of the Antibiotics, I
would go on and off the program every month or two for a year and a half. My
routine would be to get a DMSO treatment, go on Antibiotics and Nystatin for 14
days, and I would go into remission for a few weeks and then start into a
relapse. I stayed on the Acidophilus all the time. I have been in extended
remissions and relapses several times since then. I learned a little bit from
each one, but I could not put it all together for a cure.
If my experience sounds too simple, I am happy about that. For me it was cheap,
I did not have to consider surgery or any radical treatment and my only side
affects were a few days of flu like symptoms when I first started the Nystatin.
I will try to explain step by step the events that led up to the success I have
had treating my Interstitial Cystitis.
Through some very unusual circumstances and luck, I accidentally found the
relief for (MY) I. C. that I had been looking for since I was diagnosed with
Interstitial Cystitis.
On Aug. 15, 1999, I was in the middle of a BAD relapse or flare, so I started my
usual routine. Hoping for some relief, I called my urologist and got an
appointment for a DMSO treatment for 3:45 p. m. Aug. 18th, 1999.
Since I thought I had some infection I started on the same routine that I had
used a number of times before. I started on 2 Doxycycline and 2 Nystatin a day.
I had done this before with no problems, but this time I broke out with the
hives.
I quit the Doxycycline and Nystatin for about a week. I still have no idea if it
was the combination that caused the hives or something else. I have never had
the hives more than 2 or 3 times in my life.
Since I thought I might have some infection, FOR EVERY LOGICAL REASON I can
think of, I should have started with an Antibiotic for 14 days and followed it
with the Anti-Yeast treatment for 14 days.
Also, for whatever reason I DO NOT KNOW, I started on the NYSTATIN ONLY, 2 a day
for 14 days. I noticed an unusual improvement on the 12th and 14th days after I
started the treatment. On the 15th day and again FOR NO GOOD REASON, I continued
to take the Nystatin ONLY, 1 tablet a day. My big improvement started Oct. 2, or
30 days after I started the Anti-Yeast program. I am still on Nystatin, Jan. 20,
2000, 1 a day, and will stay on 1 or 2 a day until I feel sure my bladder is
completely healed. I wonder if I should have stayed on 2 Nystatin a day for 30
or 60 days. Some people take higher doses, but your doctor should make that
decision.
I will try to explain why you may want to discuss this idea with your doctor and
why it may have been overlooked for so long.
If you do not have a vaginal yeast infection, the biggest problem you may have
is to convince your Doctor that you have an Intestinal or Bladder-Yeast
infection. The next big problem may be for you to convince yourself that you may
have a yeast or fungus problem. I had no obvious sign whatever of an intestinal
or bladder yeast infection, and if there is a test for intestinal or bladder
yeast infection, l do not know about it. If you had a vaginal yeast infection, I
would guess your Doctor might prescribe a short term Anti-Yeast treatment. In a
few days you would be better and that would be the end of the treatment.
If you can convince your Doctor that you have an intestinal or bladder fungus or
yeast infection, I think it might be normal for him or her to put you on a
short-term anti-yeast program. In a few days you might feel better and that
would be the end of the treatment, BUT THAT WOULD NOT BE LONG ENOUGH TO LET YOUR
BLADDER HEAL. I wish I could tell you how long it will take, but I feel I am
getting close on Jan. 20, 2000.
I asked my pharmacist how long I could take 2 Nystatin, 500,000 u a day on a
prolonged basis and she could see no problem, for several months, but be sure
you ask your doctor or your pharmacist. If you have a problem getting a
prescription for Nystatin for extended use, check with your pharmacist, or there
is a lot of information on the internet on Nystatin for prolonged use. Nystatin
also comes in powder and liquid forms.
I have a book, "The Yeast Connection and the Woman" by Dr. William G.
Crook that I refer to often. He explains Candida Albicans or Fungus-Yeast
infections and a lot of the ways they can affect your health. There is one
chapter on Interstitial Cystitis. He has an excellent explanation of the die off
reaction that causes you to feel like you have some flu symptoms the first few
days after you start the Anti-Yeast treatment. He discusses Endometriosis,
Vulvodynia, Chronic Fatigue Syndrome, Fibromyalgia, Headaches, Depression and
Yeast Infections that might give you hope for some form of relief. This book is
available in most libraries.
I know several people who consider their I. C. cured, but all that I know of
have been on some form of long term Antibiotic, Anti-Yeast, and Acidophilus
program, and some for as long as 2 or 3 years.
After my experience with the YEAST ONLY TREATMENT, I wonder if I was in a
vicious circle. Were the Antibiotics I was taking creating a need for the
Anti-Yeast treatment and delaying my hopes for a cure?
If anyone can work out a plan with their doctor and enjoy the success I have
had, I will be very happy for them.
If I sound enthusiastic, it is because it is a new experience for me to be able
to go to a wedding or a funeral without having to wear a diaper. It is also nice
to be able to ride in a car for 2 or 3 hours without continually looking for a
rest room or rest area. I do not have to keep a urinal in the car anymore.
Diet seems to be a problem for each individual to work out, but a low sugar diet
is usually recommended for yeast problems.
I was on Nystatin, 1 a day until May 7, 2000. I have not been on medication of
any kind for I. C. since May 7, 2000.
If it is not possible for you to get a DMSO treatment, and if your Doctor
refuses to prescribe Nystatin or some other Anti-Yeast medication, you may want
to go to your health food store and work out the best Anti-Yeast program you
can. I tried GRAPEFRUIT SEED EXTRACT and MSM for a short time.
To analyze my I. C. as simple as I can, I think I took so many antibiotics that
I destroyed all the good bacteria in my system and developed a serious yeast or
fungus in my bladder. When I got rid of the yeast, and let my bladder heal, I
got rid of the I. C. I will remind you that I did not have any obvious sign of
any kind that I had a yeast infection.
My only suggestion is that when you start feeling better, don't start drinking
coffee or eating the things that you know irritates your bladder. Wait until
your bladder heals.

IF YOU TRY THIS PROGRAM, I WISH YOU ALL THE SUCCESS I HAVE ENJOYED.

There is a questionnaire included with this paper, and if you decide to try this program, it is VERY IMPORTANT to me that you return the questionnaire. I
also hope you can enclose a donation, CHECK OR MONEY ORDER, and mail it to Bill Clary, 2605 Lynnwood Dr., Columbia, MO 65203, so I can continue to work
toward finding the CAUSE of I. C. and hopefully the CURE. I know how to work for the cause and cure, but it can be expensive.

If I can get enough financial support and favorable questionnaires back, I hope to get more research money spent on a CURE for I. C. We have an
excellent University Teaching and Research Hospital here in Columbia. I would hope a clinical trial could be a first step toward a CURE.

It seems to me that there has been too much spent on controlling the pain and
tolerating the other problems associated with I. C. and not enough on the CURE.

Nothing would please me more than to be able to make a contribution toward
getting some relief for a lot of people with this terrible health problem.

Good Luck and Good Health

Bill Clary

QUESTIONNAIRE
When you print this, use the one-page questionnaire here.

Were you on an extended use of Antibiotics before you were diagnosed
with Interstitial Cystitis? _______________________________
Date you were diagnosed with I. C.__________________________
Date Started the Anti-Yeast Program_________________________
Type of Anti-Yeast Medication_____________________________
Dosage_______________________________________________
Side Effects, if any?_____________________________________
____________________________________________________
Any improvement in I. C. related problems? ___________________
_____________________________________________________
Other Medication or Supplements_____________________________
_____________________________________________________
Other Supplements forYeast____________________________________
_________________________________________________________
Diet_____________________________________________________
_________________________________________________________
PROGRESS 30 Days Excellent Good Fair No Help
Comments________________________________________________
_________________________________________________________
_________________________________________________________
PROGRESS 60 Days Excellent Good Fair No Help
Comments________________________________________________
________________________________________________________
________________________________________________________

It will not be possible for me to answer your letters or e-mails
individually, but if I can summarize the information on the questionnaire in
a paper that I think is useful, I will make it available to you. Send me
your E-mail address if you like,

OTHER COMMENTS:

Bill's story and IC questionnaire can also be seen at
www.interstitialcystitis.net